Well, the inevitable has happened. Two inevitable things actually. The first happened a week or so ago as we were walking around Top of the Park (an outdoor concert series in
I often find myself holding my breath when his eyes glow in public or when we introduce him to someone who doesn’t know about his condition. In the back of my mind, I imagine the person thinking to themselves, “What’s with this baby?” In one-on-one situations, I can feel the tension as they try to form a question that will politely satisfy their curiosity. Sometimes I am relieved to have a chance to explain and the information comes tumbling out like the rush of water through a broken dam. Other times, I am tired of the whole situation and only give brief, evasive answers. But in public, I can do nothing but helplessly observe human nature at its best and its worst.
On this particular night, the worst was confirmed as we pushed our way through a crowd and a man yelled (yes yelled) to the person walking next to him, “Did you see the eyes on that THING?!” My initial reaction was to think he meant how wide Emerson’s eyes were, but the meaning behind his tone was unmistakable. And to call him a “thing?”
I knew it was coming from the moment he was diagnosed, but this first major experience still hit me hard. It will certainly not be the last time we encounter a thoughtless idiot in public, and it will only get worse as Emerson begins to understand what’s going on. It’s going to be up to us to figure out how best to deal with it and model that for him.
Which leads me to the second part. More and more lately I’ve noticed Emerson’s eyes turning in. It’s only brief and only one eye at a time, but it’s a sign that he will most likely have strabismus – or crossed eyes. This morning as we were leaving for a wedding, I took a picture of him in his adorable, old-fashioned sailor suit (I have to torture him while I can!) The picture was perfect except that it caught him with one eye severely turned in, giving me proof of what I was hoping was only a figment of my imagination. When we got home later that day, I did research on strabismus and found a dizzying array of information on surgeries, eye patches, visual therapy, special glasses, etc. that could help with the condition, although none were a sure bet.
I don’t know why I keep doing this to myself, but I feel compelled to research something, which only makes me overwhelmed. As usual, I broke down into a depression – leaving Robbie to take over mid-way through a diaper change so I could sob on the living room floor. It seems like such a small thing to be so upset about, I know, but it opened this enormous well of grief.
Part of it is that of all the eye conditions that affect people with albinism, strabismus is the only thing he didn’t have yet. I was hoping against all hope that he would escape at least this one, but it doesn’t appear that will happen.
The other part of it is very shallow, I must admit. I don’t want Emerson to have one more thing for people to judge and make nasty remarks about. I want people to see the bright, incredibly funny little boy he’s turning into, not see a little boy with crossed eyes.
I know from my research that he could have surgeries to correct the problem, both for cosmetic purposes and to improve his vision, but we will be faced with tough decisions as parents. Do we live with the strabismus for several years first, attempting to correct them with patches now and visual therapy later in order to avoid surgery? Or do we attempt the surgery as soon as possible, putting Emerson through pain and possibly facing multiple surgeries to get it just right? The awful truth is, I don’t want him to go even one month with crossed eyes, but I know that’s the shallow part talking, not necessarily the good parent part.
Then again, maybe it is the parent part. I feel VERY grateful he’s alive and otherwise healthy, but a deep, primordial part of me wants him to have every advantage he can, even in the way he looks. Maybe it goes back to survival of the fittest and not wanting my baby to be the weak one at the back of the pack who gets picked off by the lion. (I obviously watch too much Animal Planet.) Maybe it’s our society’s obsession with looks or simple parental pride – you know, the kind you feel when your baby achieves some silly milestone like being in the 90th percentile for head circumference or rolling over a month before most babies.
Unfortunately, the most basic fact is that I worry what people will think and say because I have been that thoughtless idiot myself. I have never yelled anything in a public place, but I have certainly thought equally judgmental things about other people in my head. So I guess if there’s anything I can take out of this experience so far, it’s to reframe my own thoughts about what is beautiful and normal. I am the first to preach strength in diversity, but I haven’t always lived up to my own standards.
Most importantly, I have to let go if other people aren’t able to see Emerson the way I see him. Whatever happens with his eyes, he is beautiful and he is mine.